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Mantle cell lymphoma - need survivor stories

eeyora

Posts: 2
Joined: Jun 2005

Jun 27, 2005 - 4:14 pm

My husband (42) has just been diagnosed with mantle cell lymphoma. He will be starting hyper-CVAD with rituximab probably next week. Then, he is going to have an autologous stem cell transplant. I would really appreciate any survivors out there who can let us know what he should expect and offer some hope that he has a chance of beating the dismal odds we've read about. We've got 2 kids under 2 yrs. old with abother one on the way, and we are having a really hard time with this. We need some hope.

I was diagnosed with stage 4 Mantle Cell when I was 43. I received 4 months of Hyper CVAD followed by a donor stem cell transplant. The treatment was no picnic - I was frequently nauseated and weak. I lost 30 pounds within a couple of months (I started at about 195) and I had a chest tube for a month because I contracted pneumonia.
There were lots of tests, some pretty unpleasant, and constant monitoring of my blood levels, blood pressure, etc. I couldn't sleep for the first couple of months and I had continuous hiccups caused by the chemo for a good six weeks.
I had many difficult days emotionally. My friends and family were almost always there for me but I spent many difficult hours by myself. The hospital was understaffed and underfunded and provided very little in the way of emotional support. You or somebody close to you have to become your own advocate and insist that you need counseling or help sleeping or treatment for nonstop hiccups or whatever is being ignored by the overworked staff.
I hated being incapacitated and feeling that my life was all about my illness. I got out of bed and walked around the hospital as much as I could. I was fortunate in that my friends and family - some of whom worked in the hospital - understood that what I needed most was company to take my mind off of things and give me something else to think about. You have to think about living as much as you can and I often needed the help of my people to do it.
The year after my transplant was not easy either. I was incredibly relieved to be out of the hospital but I had to see my doctor two or three times a week in the beginning and continue to receive various outpatient treatments. I was also always concerned that any health anomaly could send me back to the hospital - I was told that I would have to go to the emergency room of my temperature ever got up to 100. I had to have frequent transfusions for my anemia.
Eventually, things have become more manageable. It's been 2 1/2 years since my transplant. I still see my dr. about once a month and I still get Aranesp boosters for my recurring anemia and, though I have never felt quite as well as I did before (I'm never quite sure if that's due to the illness or if it's just a fact of enterting middle age), I live a relatively normal life. I've been back at work full time for about a year and a half, I do most of the things I did before - some travel, occasional bike riding, playing with my son, the usual stuff of life.
You mention dismal odds. I don't know the particulars of your husbands' case but, though I asked not to be informed about "the odds" while I was undergoing treatment, there was an article by Stephen Jay Gould that helped me a lot about not giving too much weight to "the odds." Before I began my treatment, a friend who is a physician's assistant gave me a very long talk about how the course of treatment was going to be difficult and that, to have a chance at success, I had to want to do it for myself - not for my son, not for my friends or family but for myself. Your husband can't think about the odds, he just has to determine to continue to live as well as he can every day (with as much help as he can get), don't be passive about his treatment and, though he's entitled to down days, don't ever give up.

Your treatment is exactly what my Dad has been prescribed. He goes into the hospital today. Question: Where you as frustrated as we were about the long period of time from the first biopsy to diagnosis. It took three Dr's appointments after all of the tests to get a final diagnosis. To get the diagnosis we had to drive all the way to Tampa from Cocoa Beach/Titusville.

Yesterday the nurses gave us an education on the drugs. Dad had already been through ed on some of them, she had to go over the new ones. She flipped through signed and unsigned papers so much she repeated herself and left a few things out. I finally asked her for a copy of the chemo plan so I could research for myself. Lots of family wants to understand the drugs and their effects as well as the course of treatment. The journey to diagnosis doesn't sound half as bad as the journey through treatment. The studying helped me feel better, what else can I do? I want to keep my family calm.

I'm concerned. My father is not a big man. His top weight has been about 135, he last weighed in at 111 and that's after we tried to fatten him up. He was only to gain 5 pounds and now treatment will begin.

The Dr. said that after this first treatment the tonsils should go down and he'll be able to take larger bites and eat more. Not sure if the drugs will work against him in that department.

I am scared to death !!!!!! I was diagnose this morning with Mantle Cell Lymphoma ... I was told I could try the cell transplant and if not eligible then start Chimio. As many patients I was diagnosed at stage 4, It seems to me like a bomb fell on my head, I have neve been sick in my life , I am obese and until May 19 2009 I was fine.
I do not know for sure whaty are my chances and am panicking... That is the reason I am online searching for a rainbow and some accurate answers...
I live in Pittsburgh. I am searching for an accurate rate of surviving and online I get statistics from 2005 I did not find yet the ones for 2008- 2009
If anyone wants to chat or just post me a note I will always answer.
Thanks to every body.

I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was located in my colon. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. I had a stem cell transplant (SCT) on 09/04/08. My new birthday. :) I was able to use my own SCTs. My blood was clear. Did transplant in Dallas, TX. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had my last colonscopy in Dec. 2008. It showed a complete recover from the cancer. I am now being watch every 3 months to keep an eye on the cancer. Finding out that you have cancer is a real big blow in anyones life. Support from drs, family and many friends keep me going. A positive attitude is very important. The imporant thing is to fight. Cancer is a battle. Praying that God will put doctors and others in your life to answer your questions. Always ask questions.

My father was diagnosed with MCL 14 months ago. He began treatment in Sept 2009 and just finished sixth round of RChop. His pet scan was clean and he is waiting for results on his bone marrow. He is 64, feels great and hardly missed a day of work during the treatment. His doctor says he is the perfect candidate for a stem cell transplant but he is terrified! He prefers to go without, and wants to go for maintenance chemo. Thinks the stem cell transplant will make him terribly sick. How did you do with the transplant? He needs lots of encouragement.

My father was recently diagnosed with Mantle Cell Lymphoma. He is missing a Q13 gene along with P17 gene...both cancer fighting. He is about 65 years old and not the most in-shape person I know... I am really scared and would love any information that you can pass along.

By now you probably already have gone through some chemo treatments. How are they going and what kind are you getting? I got Rituxin before chemo started each time, H-CVAD, every 21 days I entered the hospital for a 3 to 5 day stay. I had week A & week B....so every other time I went in the chemo changed. I had swollen lymph nodes under my arms, in my abdomen, in my groin and "slightly" positive in my bone marrow. Traces of cancer cells found during the endoscopy and colonoscopy. After the 3rd round of chemo, another bone marrow biopsy came back negative. Ater the 5th chemo I had another PET scan and CT scan and it showed the lymph nodes were normal. Over the course of chemo I had to have blood & platelet transfusions. After round 5, my platelets did not come back up to the 100,000 needed in order for round 6. I had already had my own stem cells harvested after chemo 4 to be kept for the transplant. The Doctors at Dana-Farber in Boston, MA said skip chemo 6 as they were gonna give me chemo anyway. I spent 3 weeks in the Boston hospital; 4 days of chemo and my transplant on Aug 11th -- my new birthday!

Since arriving home on Aug 25th, I've had lots of Dr appts (in Maine every 2 weeks and been back to Boston 3 times so far); lots of CBCs; blood and platelet transfusions; ran a temp and spent 5 nights in the hospital (never did find out what was wrong with me); my blood numbers are struggling to get back to normal. Most days I feel pretty good; I may tire a little more quickly then I used to, but a few minutes of sitting down and I am good to go.

From what we were told is that chemo alone is a 40% chance of cure and with stem cell transplant it raises it to 70%.

I would like to hear how you are doing and how your treatment is. If you would like to email me or just post, I'd be happy to answer any questions. I've been looking for someone who has this rare form of cancer -- just to have someone who understands what I am going through. By the way, I just turned 47 yesterday, female, married, one son/17 and two stepsons 30 & 23.

Hello,
I start checking this web site off and on. There is not very many people have Mantle Cell lymphoma. My husband just got done having his Stem Cell transplant after having Maxi-chop with ara-a. He had his PET scan today and we should find out Thursday how things are going. I'm glad to hear your feeling good for what you have been though. Would love to talk to you more if you like. I'll check again for your reply in the next few days

Hello, I had been diagnosed with mantle cell too. I live in PA and am 48 male, single and eat a healty diet. I found a lump on my neck back in June and seen my dr whom told me it was most likey nothing to worry about, three months later I was in to see a ear,nose,throat sp and he did a biopsy and gave me the news of it being a lymphoma, non-hod. Than I was referred to an onc whom at first glance thaough it was a "regular type indolent" type but further tests concluded it was mantle cell. The specilists I have seen told me that this type of cancer can be both indolent or agressive and luckly mine is on the indolent side. I am just now deciding which route is best to take at this time. I am presented with a lower toxicity chemo plan or the heavy in hospital chemo with a stem cell transplant. The one Dr. is very confident he can "cure" me with this treatment.

I hope you are doing well and will write me of your experiances. You can contact me here or via my e-mail at skibum789@aol.com

My son (31) was diagnosed the end of July 09 with Mantle Cell. What a blow. I had
been telling Chris for almost 3 years that he needed to go get the lumps on his neck
checked. I guess ignorance is bliss in his mind. But finally after my constant nagging,
he went. Before the biopsy, they told him he had cancer. The biopsy confirmed the mantle cell. Immediately, he was accepted at Memorial Sloan Kettering in NYC. We live in Orange
and Ulster County in New York. Their regime for treatment is to start with R-CHOP for two
months, RICE for about 5 weeks. Currently he is in the hospital starting chemo (BEAM)
in preparation for the stem cell transplant. That is scheduled for late next week.
From what the onc's here say, they believe that the most aggressive treatment up front
can get a longer remission. I hope that they are right. Thankfully, he was able to
do everything (work related) with a few days here and there which were a little rough.
There were some side effects from the chemo. Hopefully they will not be permanent.
Good Luck and many Blessings. If there is anything I can do for you, please don't hesitate
to ask.

Hi I was diaagnosed with MCL this year had 6 rounds of chemo and I am in remission. They say I am a good canidate for a SCT.

I was wanting to knoow how your son is doing after his.I hope is doing well.I Am trying to get as much info it is a big decision Whether to wait and see,doa rituxin maintenace every 3 months or do SCT for long term. If you can give me any info it would be greatly appreciated.Thaanks Dave

Hi my dad was diagnosed with mantle cell lymphoma about 4 weeks ago. He is also aged 48 and has never been very ill in his life. He is active and everything else about him is very healthy. We live in London and he is attending a hospital here, however, we are looking for better options in terms of treatment and hopefully a cure.

He is at stage III it has not reached his organs or bone marrow, it started off in his neck and there is slightly mild high uptake in his inguinal and iliac lymph nodes shown on the PET CT. They want to start him on Cyclophosphamide, Doxorubicin, vincristine and steroids. From what I know hospitals in the USA are better for treating this type of cancer. And from all the stories I hear hyperCVAD is best for treating this. As well as a stem cell transplant.

They have decided to start the treatment in 3 weeks, which I feel is too long a wait, and I'm not sure this is the best chemo combination.

As We live in the UK we don't know much about Hospitals in America, so please please please could the survivors of mantle cell lymphoma recommend a few good hospitals and doctors to look into. We are desperately trying to find new options as I feel this cancer can be cured. He has 5 children the youngest being 20 months old, we don't want to lose him. He is strong and healthy and I feel no matter what the side affects are he can overcome them.

HI my husband has just been diagnosed with Mantel Cell but we havent had it staged yet or got a treatment plan - like you I have heard hyperCVAD is the best treatment + stem cell but I haven't told him yet.
Where are you being treated - we have been recommneded the London Oncology clinic but don't want to travel from Cambidge

I hope your dad is doing ok from what I read the treatment is hellish.

In July 2009 I was diagnosed with stage IV Mantle Cell Lymphoma. I had very toxic treatment....kind of a combination of hyper C vad and R chop followed by autologous stem cell transplant in March 2010. I am feeling ok, but am nervous for my next round of PET/CT scans next month. I was told I received the latest in treatment available for MCL and to go and live my life....so I am, but it is hard to 'shake off' the fear of relapse.

I had 6 treatments, each one week long in the hospital in our city, over 7 mos. I got through it day by day and was told by dr. not to be looking at MCL articles on internet as treatment and outcomes were changing rapidly and a lot of the info out there is negative and outdated. My stem cell transplant was done at a hospital on the other side of our state (Michigan)

So, I went forward with positive thoughts and got through the treatment. Looking back, yes it was bad and I was very sick. But through the grace of God I got through it. Positive outlook, sense of humor and prayerful support of friends and family really helped.

I wish your husband best of luck. It is a journey to be sure and there really are 'gifts' along the way....the appreciation of every moment of your life intensifies.

It is hard dealing with the initial shock...it helped me to talk to someone who had gone through it. It took me four times to get the courage to contact this person because I was unsure of what to ask....but the conversation was so helpful! When had to go through the same thing, I remembered what this friend told me.

Also, we have a wonderful resource/support center through a 'Gilda's Club' in our city. The support groups for family and caregivers were wonderful. Wish I could be there for a cup of tea and discussion with you.

Hope you are monitoring this site. We are so sorry for your diagnosis but want to reassure you that there is a real basis for hope. My husband was diagnosed in July '11. He was also at Stage IV. His rbc was 1.6 and his bone marrow was 90% packed with MCL. He was dying. He had a fairly new drug bendamustine with Rituxin. Also called Treanda. Benda was developed in Germany behind the iron curtain (don't know what they used it for) and just recently it has been used for MCL and even more recently here in the states. Do some research on it, it is a life saver. Due to my husband's health situation, they only gave him 1/2 dose of the chemo. This was in Aug '11. He rallied after that one one treatment. From then on he received 3/4 dose every 3 weeks. We asked the doc why not up it to 100% dose since he was better and he said "Why rock the boat, since you are doing so well?" He finished his last chemo in Feb '12. and is on a 2 yr Rituxan maint every 2 months. He just had his 2nd CT scan and is in complete remission. It will be a year in Feb. He feels better than he has in a few years. They figure he had it for a long time before diagnosis. Please talk to your doctor about the bendamustine/rit. My husband had no side effects from it and no hair loss. He was just a little extra tired about the 4th day after his chemo and would take a long nap but no nausea or anything. They are doing a lot of research on NHL and MCL in Germany and we even emailed some doctors there and they tell us there is a lot more on the horizon. They also reassured us that at the moment we have everything in the states that they have in Germany. Like I said, please research bendamustine and Rituxin and also research it on this site, there are some encouraging stories about these wonderful drugs. I will monitor this particular site if you have any other questions. Please be assured of our concern and well wishes for you. You are not alone in this battle. Bill and Becky

Hi I was diagnosed earlier this year with MCL.I did 6 rounds of chemo and i am in full remission.I had MCL stage 3 They say I can wait and watch, do Rituxin evry 3 months for 2 years,or I would be a ecellent canandate for a stem cell transplant. I hoping your husband is doing well. Any info greatly appreciated.

2407
My husband was diagnosed in early December 2010, we are still trying to get as much info as possible on MCL and are very anxious as I am sure you are. We are involved with Overlook Hospital in Summit, NJ. We were also sent to Hackensack University Medical Center in Hackensack, NJ for second opinions and opinions on stem cell transplant. Both are treating cases of MCL. Keep me posted on your progess and I will do the same. I hope for recovery for all of us.

Hi, my husband was diagnosed with MCL Stage 4 - in November 2010. He has been going for treatment at Hackensack University Hospital, and this week will be coming to his final and 6th treatment there! :)
He is 53 years young, and did not have a stem cell transplant. He is considered to be in full remission! So far, so good! He is dreading the next 'B' treatment- which did cause an anal fissure. However, we are told he should expect to fully recover from the treatments side effects. He is also on a special Vitamin B treatment (not near the B chemo though)- and this has helped the neuropathy improve. We had originally checked out Memorial Sloan Kettering, and also New York Hospital. We landed in Hackensack with Dr. Goy, who actually created the program at MD Anderson, and had also been on staff at Sloan Kettering for many years. Dr. Goy (pronounced Gwua) has seen more MCL than anyone in the world. He started out in Europe, and now, 10-15 years later, there are people walking around today who went through the protocol he set up there. We are hoping for a long, long remission as well :)

Jam-man What was the treatment you received by Dr. Guy? Looking for treatment plan for my 66 year-old father who has been on two regimens of treatment for mcl already and must look for other method of relapsed disease now. thank you.

I came across this blog and saw your posting. I live n the area and decided not to go to Overlook and went straight to Hackensack. This is regarding my dad not me. He was just diagnosed with MCL and we are seeing Dr. Goy. Just started the process and will find out his suggested treatment on Monday. I was just wondering how your husband is doing and what treatment he received.

My brother has just been diagnosed with Mantle Cell Lymphoma and we are considering treatment facilities. I would encourage you to consider a couple of things. Cancer Centers of America is well respected and has centers through out America. If you know a particular are of the USA that you would like to come to then I would consider one of the larger university hospitals. You want to be at a treatment center that is up to date on the latest protocols.

my dad was diagnosed with mantle cell lymphoma about 3-4 weeks ago. He just started chemo this week...maxi chop with high dose cytarabin. He's supposed to have 6 cycles 21 days apart followed by an auto cell transplan. I was just curious how your treatment was? My dad is scared to death and I'm trying to find survivors for him to talk to. We're in pittsburgh and he's being treated at hillman cancer center.

Welcome to our forum. I know how scary it is to be diagnosed with MCL. My husband Bill was diagnosed in July '11. He was in complete remission after chemo but relapsed 2 yrs. later Feb "13. He is on a new target drug Ibrutinib that was released only for MCL in Nov. '12. You can read more about his story by clicking on our picture. Please know that they have come a long way in the research of MCL and it is not near as ominous as it was before. He has been back in remission since taking the Ibrutinib (4 pills/day). There is another man Joe, who I have been messaging privately to, he was also facing an SCT but he went to MD Anderson in Houston to Dr. Michael Wang who was a main researcher for Ibrutinib. Joe is going to start in a brand new clinical trial which will use Ibrutinib as a first line treatment along with Rituxan followed by a stronger chemo HCVAD. They are very excited about this and Dr. Wang told Joe he does not suggest an SCT and he is a big proponent of them. We have spoken to 3 other MCL researchers (2 in Germany) who also suggest not. I am just the bearer of information and by no means not an expert. I want you and your father to know though that there is a lot of hope now for MCL and tons of research going on, so your father may want to get a 2nd opinion or at least have his oncologist confer with some other more experienced oncologists with MCL. A couple other names I know are Dr. Brad Kahl Carbone Cancer Center/Univ of Wisconsin and Dr Andre Goy, New Jersey. I hope this helps. Also, as you may note, you have posted on an old thread, so it would be better if you start a new one as it is a little difficult to find you on this one. Again don't lose hope, we are very encouraged and able to go on with our life.

I was just diagnosed with mantle cell on 2/8/2010. Had my first RCHOP21 on 2/12 and will be doing 6 cycles with a stem cell transplant a possibility later on. I am a 61 y/o female and had symptoms of slight fatigue and shortness of breath. During the holidays 2 bruises showed up on my arm and leg. Since childhood asthma resurfaced in early 2009 I thought the symptoms other than the bruising was related to the asthma.

My blood work came back bad and after many tests, including a bone marrow biopsy, I was diagnosed with stage4 mantle cell with a lot of the disease in my bone marrow.

Doctors are upbeat, my side effects from the first treatment were minimal and I am trying to be as positive as I can be.

Sorry to hear about your d/x of MCL. I am 53 years old and will be a 2 year survivor in April from MCL. I went through R CHOP chemo and then BEAM chemo and had a stem cell transplant in 2008. Been cancer free since December 2008. My MCL was not in my bone marrow and was my own stem cell donor. MCL is rare but there is a lot of research being done and have been done in the last few years to treat it.

I am hoping you monitor this situe and can update me on your story. I was diagnosed last month and being a female with MCL is lonely. I've had one round of treatment (bendamustine and rituximab) and will have five more, then a stem cell transplant.

My husband has been recently diagnosed with Mantel Cell and is receiving Hyper CVad and they are now sending us to see about stem cell transplant as well. He is a 59 year old and very healtly guy otherwise and never sick. How have you done with the stem cell? We are just learning all that is involved and must say a little un-nerved. He has completed cyle 2A and will ge going back in for for 2B in another week. His early scans (done last week) look promising and I want to grab every oppurtunity to keep this in remission. How do you think the stem cell helped you. Any words would be greatly appreciated!

I'm female and coming up to my one year anniversary since the stem cell transplant. I also did the HyperCVad. Had trouble in round 4 with neuropathy from the vincristine. They stopped vincristine and neuropathy did go away. Also had to battle pneumonia...that was worse than the chemo experience.

The SCT went well, I think it was actually easier than the 6 rounds of chemo. It sounds like a huge thing, but the actual process of the transplant was okay. My 6 mos. PET/CT scans were clear...looking forward to more good results next month. I'd be happy to talk more about it with you if we could get in contact. It helped me greatly to talk to someone who went through similar treatment prior to my ordeal...she had stage 2, mine was stage 4....the journey and rallying was similar. I was 60 when diagnosed in July 2009. I never thought I would ever feel as good as I do now. It is a new normal and I have to take some rests during the day...but each day is a blessing.

I am hoping you monitor this site and can update me on your situation.

I was diagnoised last month - I'm a 59 year old woman. I've had one round of chemo, with 5 more scheduled and then a stem cell transplant. That part of treatment scares me a lot. I am having bendamustine + rituximab, a newly adopted standard-of-care for the province of British Columbia, where I live. The one cycle was well tolerated and I'm hoping the rest will be ok too.

I was given a stage 4 diagnosis July 2015. I am a 60 year old female and I experience no symptoms and am very fit and active. My neck has lumps on both sides but nothing else is obvious. The oncologist approved a wait and see treatment since there are no changes at this time. I am at a higher stage because there is a low percentage of mantle cells in my bone marrow. I will have more blood tests and follow up at the end of November. My hope is that I can go on for a long time without treatment. Has anyone heard of or experienced longer term survival without treatment?

First, hope you are doing well. Second, I'm wondering the same thing. Having lots of questions about. quality of life, survival, Does anyone know people who chose an alternative way, and how they are doing? Other support lines? I am in search of information. I, too am a 60 year old female. Really want to get on with the rest of my life, whatever that is. Thank you.

I am starting cycle 3 this morning. Expect that you are in good care, that staff knows and will keep you informed. Knowledge is our power. If you feel you are not getting the information you need - about everything, meds, chemo, etc. - be assertive. A good medical facility has a good administration, and don't be afraid to ask to speak to the nursing administrator, etc. if you feel you aren't getting what you need to feel empowered.

My oncologist is referring me to another facility to learn about stem cell transplants, too. I will have that appointment after this cycle. I am a good candidate because none of my lymph nodes were lit up in last week's PET scan. Actually, one of my questions of my doctor was, how do I know I still have cancer? There is no way to answer that question, and I am wondering what others think about that. How do we know when we are healed, other than accepting the answers from our oncologist?

If I continue where I'm at, I will complete a total of 8 cycles. My first hospital stay was 32 days, because my counts wouldn't stabilize enough to allow me to go home for more than a one day pass. After cycle two, I spent two weeks at home, and you need to make sure someone is there to help you because you will be tired. A strong support system is important.

I hope your chemo is going well. Reach out if you find it helpful. I just realized you're two weeks into it. Bless you.

After my last chem the CT & PT scans both came back clean. Bone marrow biopsy came back with some cells they initially said were lymphoma. I started the meetings to prepare for the stem cell procedure. We had a timeline set, meds ordered to increase t-cell creation. The day before I was to start the meds I got a call they putting it all on hold and I needed to meet with the dr. What happened was there was a bone marrow test that took longer than the others to complete. It had just come back and it showed that the abnormal cells were of a type that could turn into an aggressive cancer. That means they cannot use my t-cells for stem cell. We are now in process of looking for a donor and the procedure wll be re-scheduled for some time early 2016. That good news is that I am in remission from my lymphoma.

Hello, I was recently diagnosed with Mantle cell lymphom, back in Sept 2009. My local Onc wanted to put me on heavy duty chemo where by I wound be hospilized but suggested we get other opnions. I went to Hershey Mecical Center in Hershey PA. Their is a Dr. Elliot Epner whom "specializes" in mantle cell. I do feel very comfortable with him and his team. He has suggested an alternative treatment using Rituxan, Cladribine, and Vorinostat. These are much less toxic to the body and can be done on an outpatient basis. He has had very good success rates in patients whom he has treated in this fashion. Of course the low toxicity of these chemo's is appealing to me. I had another opion from Fox Chase Cancer Center in Philly and they recommended the standard treatment of heavy duty Chemo + a stem cell transplant. I am having a hard time deciding what to do as the heavy duty chemo + stem cell gives a 70%+ cure rate but is very hard on the body. Dr. Epner feels that he can put my cancer in a long term remission or cure it altogether with the lighter treatment and no transplant at this time. We would go down that road later if need be. I am 48 and in good health and decent shape. I never thought I would have to deal with this, how your goals in life change real quick, a few months ago the future was wide open and bright now I feel like I have a dark cloud over me. I live alone and am self employed so it makes it harder for me to keep this out of my mind and think positive. Although I beleive in God and hope he will direct me to the right Drs. and treatments, and friends for support. My God be with all of us and our families. If anyone is out their that has mantle cell I would be interested in knowing how things have gone for you. Thanks to all. Rich

Hi Rich,
My husband 42 found out he had Mantle Cell in May 2009. Started the journey in December with lots of going back and forth to the Dr. test after test before the biospy in May. We started treatment in June with R-Maxi-chop. alternating Ara-C (Nordic protocol) and the Stem Cell transplant in November. He was very healthy going into the treatment and did very well. He had to stay 3 weeks in the hosiptal during the transplant and had about 5 rough days and transplant but overall I was happy with how things went. Its so hard to find information on Mantle Cell, but I have read of up and coming advances. Good luck to you and God will guide you though, he did us. You can email me at msdina257@aol.com if you like.

Hey Skip. I was diagnosed with MCL on February 5, 2009. I was stage IV with one lymph node involved and "slight" bone marrow involvement. We elected to go with HyperCVAD in patient treatment and spinal treatment as a precaution as MCL can penetrate the spinal cord and brain. After 6 inpatient treatments all my reports came back negative. I had two more treatments for good measure and elected not to have a stem cell transplant. I was 46 years old when diagnosed (and female). All my test in December came back negative again. Praise and Glory to God. By His stripes I am healed. Keep a positive attitude, speak life and know that He will never forsake you and you are never alone, He is always with you.

I was 59 when diagnosed in October 2007. Today I am felling well and doing fine. Since I was treated at the Dana-Farber Cancer Clinic in Boston, (one of the best in the world) by the director of the hemotology oncology department. Dr. Arnold Freedman (also one lf the best in the world) I believe my treatment can be looked upon as a classic example of how to approach MCL. Of course no two people are alike, nor is their illness.
For what its worth here is my story.

Cancer was stage 3 and slow growing. We waited 3 years before treatment as I was asymtomatic except for enlarged lymph nodes.
Treatment began with R-CHOP, less toxic than Hyper-CVAD, although duxorubicin can effect the heart years later. After 4 chemo infusions the rate of apotosis (cell death) as 35%. My Dr. was underwhelmed with that apototic rate so he switched me to a chemo developed in Germany called Benfamustine + R (Rituximab). Bendamustine is not a very well known drug. I urge everyone to take note and inform your doctor. That switch in treatment protocol saved my life. The response rate to new chemo was 100% after 4 treatments, with one more for good measure. I was in remission. No nausea or hair loss during chemo.

Next was autologus stem cell transplant. Dr. Freedman was very emphatic. The transplant offers the best chance for the longest and most durable remission. Who was I to object? And what if in 2-3 years I relapsed and wondered what if I had the transplant? The worst 20 days of my life, but worth every agonizing moment. Delerious, nausea, weight loss, didnt eat or drink anything for 2 straight weeks. But I survived. It was emotional coming home. My wife was an angel. (Cant do this without an angel.) My hair grew back, my toothpick arms amd matchstick legs grew muscle.
I'm alive and other than lack of stamina I am back to pre-diagnosis health. I pray anyone reading this has equally good fortune.

Thank you... Please pray for my Father too. He is getting his stem cells harvested June 12th for stem cell transplant... His name is Yunus....
Wishing you, my Father and everyone long healthy lives with their loved ones...
My father has non hodgkins large diffuse b cell never had remission...:(

I was treated in patient at Massachusetts General Hospital by Dr. Takvorian with R-hyper-CVAD. I responded well and only needed three of the four scheduled rounds of treatment. Except for losing a lot of my body hair and a 36 hour nose blood (reaction to Bactrim) that land me inpatient for a couple of days, I didn't have much in the way of adverse reactions.

I relapsed in 2006 and elected to undergo an allogeneic stem cell tranplant as my sister was already typed and was found to be a perfect match. Dr. Spitzer at MGH Bone Marrow Treatment Center took over treatment from Dr. Tak. I had my mini-allo SCT (not fully ablative) in August 2006 after being given RICE chemotherapy on an out patient basis.

Except for a somewhat adverse reaction to one of the treatment drugs for a couple of days while in patient, I was discharged after 21 days in patient and went home to recover in isolation. While I couldn't go out and be around people, I would take long car rides by myself.

I returned to work full time after three months.

Then I got a rash. At the time I was still visiting MGH BMT twice a week. So a diagnosis of GVHD was given. Rash was treated topically by over the counter products and steroids by mouth.

Then I got severe diarhhea, back inpatient for Stage 4 GVHD. The lining of my small intestine had gone away.

Treatment was supposed to take 4 weeks.

Three months inpatient.

Finally got out a week after my 55th b-day in April 2007. For most of the 3 months, I couldn't eat anything. I survived on sugar free ice-pops, water and an occasionally diet coke although the docs said I shouldn't be ingesting anything. All my meds were administrated intravenously and I was also feed intravenously with TPN. I had five pumps hooked up to me at one time, I usually only had an hour or two per day when something wasn't being pumped into my hickman catheter.

Now five years later, I still see Dr. Spitzer every other month for an infusion of immunoglubin but other than that, life goes on including working full time for this 60 yr. old diabetic, single vessel off-pump LAD bypass, ulcerative colitis, and cancer survivor.

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